Five Days at Memorial: Life and Death in a Storm-Ravaged Hospital (77 page)

Dr. Guthrie Birkhead, deputy commissioner of the Office of Public Health for New York State, told me in 2009 that he wondered whether it was possible to get the public to accept the plans. “In the absence of an extreme emergency, I don’t know. How do you even engage them to explain it to them?”

AN ANSWER to Birkhead’s question can be found in Maryland. “All hell is breaking loose,” Dr. Elizabeth Lee Daugherty told a roomful of volunteers who convened to discuss triage on a Monday afternoon in June 2013. “That’s the scenario we’re talking about. All hands are on deck, we’re doing everything we can, and we are totally overrun with patients.”

The scenario she described, offering the example of a pandemic, was analogous to the one the doctors at Memorial faced when the waters rose and they had to choose which patients to prioritize first for evacuation. The sickest, because their lives relied on machines? What about those who might have the greatest chance of surviving their immediate illnesses, because saving them would be a more efficient means of
doing good? Or, for the same reason, those with a better chance of long-term survival, based on underlying health problems? Should age play a role, drawing on the principle that everyone deserves equal rights to live through the all stages of life? Or could some estimate of social worth or instrumental value in the situation at hand be factored into the mix, favoring health professionals who would be needed to assist people through the crisis? What about support staff? Where to draw the line?

Or would the fairest principle be one that is typically used in non-emergencies: first-come-first-served according to need or perhaps even a lottery that would offer an equal chance to everyone who was sick at a particular point in time? Similar questions could be asked in facing other difficult problems, including national drug shortages.

Daugherty laid out the options for the participants and turned the discussion over to them. “What are your values?” she asked. Unlike in New York, where the triage proposal was developed by experts, Maryland health professionals were seeking the input of a wide-ranging sample of the general population, in small group sessions held over a period of two years across the state. “Maryland is as far as we know the first state to tackle this problem this way,” Daugherty told the volunteers. “By that I mean having these kinds of conversations before we have developed a framework for making decisions.”

Daugherty, a thirty-nine-year-old critical care doctor, began thinking about the problem of scarce medical resources in college during a medical missionary trip to Bogotá with her father, a physician. Her interest deepened during her own international work as a doctor in impoverished regions. As the medical control chief for the Office of Emergency Management at Johns Hopkins Hospital, a 1,059 bed tertiary referral hospital and the cornerstone of the $6.5 billion Johns Hopkins Medicine enterprise, she was asked to help design a pandemic plan. In discovering how inadequate even this well-endowed hospital system’s supplies were in relation to expected demand, she recognized an acute analog to the chronic resource dilemmas she had seen in other countries.

Daugherty struggled over the question of which pandemic flu patients should be turned away from the intensive care units, sealing their fates. Could a doctor really remove one patient from a ventilator to make way for another who might have a better chance of recovering? Health professionals, who tend to favor utilitarian efficiency in the distribution of limited goods, such as organs, shouldn’t be making life-and-death value judgments alone, Daugherty thought, particularly in the backyard of Johns Hopkins Hospital, a low-income neighborhood where public trust in medicine is poor even at the best of times, a legacy of ethically questionable research studies and historical discrimination.

Daugherty and her colleagues wanted to ask nuanced ethical questions of the hospital’s neighbors, but wondered how to pose them to people who might never have considered them or might react angrily to the mere notion of planning to limit care. To design an attempt at public engagement, they turned to the Program for Deliberative Democracy at Carnegie Mellon University. The program’s work is modeled on concepts that originated in the theoretical work of philosophers Jürgen Habermas and John Rawls and were developed by Jim Fishkin, a Stanford professor who invented “deliberative polling,” a method designed to capture how opinions change when citizens are given the chance to learn about and carefully consider policy choices.

From its earliest days, the Maryland experiment proved something vital. Whether at Zion Baptist Church, in a neighborhood of boarded-up row houses in inner-city Baltimore, or at a “wellness center” in the wealthiest reaches of Howard County, regular citizens showed they were able to gather, engage, discuss these issues, and learn from one another. They easily grasped ethical concepts that some health officials had assumed were the province of only experts.

In the basement of Zion Baptist Church on one Saturday afternoon, a facilitator asked a tableful of volunteers what they thought about using age as the primary basis for allocating resources in a disaster. “We are going to discuss why this would be a good idea or not,” she said.

A young man offered his opinion.
“If this were to happen tomorrow, and if I would get a ventilator and a twelve-year-old wouldn’t, or a four-year-old wouldn’t, I just think that would be the saddest thing possible.”

A woman who was a mother disagreed.
“It’s really hard for me to say that just because they’re younger than me to give it to them, because I would feel personally like I have responsibilities and I would want to be here.”

Her neighbor extended the thought. “
There’s so many social ramifications of what’s going to happen once all these young lives are saved,” she said. “If a significant generation, if the senior citizens were cut in half, that would alter our society. That means that, you know, just like you definitely don’t want your child to die, people don’t want to be grand-motherless, people don’t want to be grandfatherless. You know what I mean? So, I’m just a little concerned about the aftermath of just giving it to the youngest person.” She worried about what would happen to the children who were saved. “Who’s going to raise them, who’s going to teach them, who’s going to really take care of them?”

Listening to the debate over the value of elderly lives brought to mind the recent funeral of my great-uncle. In his nineties with advanced Parkinson’s disease, he’d filled out an advance directive stating he would not want to be put on life support. However his doctor was out of town when he developed pneumonia and was admitted to a hospital. Another doctor resuscitated him and put him on a ventilator against his pre-stated wishes. Within days, he was sitting up in bed reading the newspaper as the ventilator puffed away. In less than a week he was off the ventilator, saying he was relieved to be alive, highlighting the complexity of end-of-life decision making, of predicting in advance what we would want in a situation we have never faced. He requested his DNR be removed. He lived a few more months, and his granddaughter, a twenty-one-year-old college student, described in a eulogy what that time meant to both of them as she spent her summer vacation visiting him in the hospital, a rehab unit, and a skilled nursing facility:
“We talked about politics,
economics, current events, gossip, books, movies, the past, the future. He taught me about social responsibility and his past. I taught him about opera and music. We even talked about boys and relationships. When he gave advice, it was always good and, more important, wise. […] I will continue to live my life as if I’m going to tell him about it.”

Sometimes individual medical choices, like triage choices, are less a question of science than they are of values. In a disaster, triage is about deciding what the goals of dividing resources should be for the larger population—whether maximizing number of lives saved, years of lives saved, quality of life, fairness, social trust, or other factors. The larger community may emerge with ideas different from those held by small groups of medical professionals.

That was clear in Seattle and King County, where a
public engagement exercise was held. Many participants thought it was unacceptable for medical professionals to withdraw life-sustaining care, as called for in many of the pandemic triage plans, in part because doing so would erode trust in the medical system.

Roger Bernier, a senior advisor at the US Centers for Disease Control and Prevention, which funded the exercise, said it is both possible and necessary to engage non-experts in these discussions. “They are the holders of our public values and are in the best position and in the most nonpartisan position to weigh competing values.”

However, this type of engagement is rarely sought. “I’m not sure we believe in democracy in America,” Bernier said. “We don’t make good use of the people. We don’t make good efforts to access public wisdom on public policy choices.”

In Seattle, members of the public at large were concerned that using survival statistics to determine access to resources might be “inherently discriminatory,”
the project report said, “because of institutional racism in the health care system; if some groups (e.g., African Americans and immigrants) do not receive the same quality of care, then their rates of recovery and other survivability measures would be biased.”

More challenging than eliciting public input is using it, particularly when it reveals contradictory, divergent opinions. How should majority and minority views be weighted? And will policymakers cede authority over decisions?
In 2009, the CDC gathered feedback on a proposed emergency vaccination program for a new strain of flu. General public opinion diverged significantly from expert opinion. However, by the time the information was collected, the vaccine policy had essentially already been made.

In 2012, the Institute of Medicine released an
extensive report backing the notion that the public should be involved in the development of guidelines for dividing medical resources in disasters. The authors argued that Katrina and other cases had shown that while crisis conditions may justify limiting access to scarce treatments, medical providers have a duty to care for patients in emergencies, to treat them fairly, and to steward resources. An earlier report also addressed DNR orders, saying they were not useful parameters of triage decision making in disasters. The orders reflect foresight and personal preferences about end-of-life planning “more than an accurate estimate of survival.” Whenever crisis conditions involve limiting access to scarce treatments, the experts said, decisions should be made in ways that are transparent, consistent, proportional to the extent of shortages, and accountable.

Dr. Carl Schultz, a professor of emergency medicine and director of disaster medical services at the University of California at Irvine, is one of the few open critics of altering standards of care for disasters. He says the idea “has both monetary and regulatory attractiveness” to governments and companies because it relieves them of having to strive to provide better care. “The problem with lowering the standard of care is where do you stop? How low do you go? If you don’t want to put any more resources in disaster response, you keep lowering the standard.” It is also reasonable to wonder, once lower standards are codified, whether some policymakers, health-care executives, or clinicians might
be tempted to apply them to non-emergent situations where resources are tight, such as when costs are a concern.

Others disagree. “Our goal is always to provide the highest standard of care under the circumstances,” Rear Adm. Ann Knebel told me in 2009, when she was deputy director of preparedness and planning at the Office of the Assistant Secretary for Preparedness and Response, Department of Health and Human Services. “If you don’t plan, then you are less likely to be able to reuse, reallocate, and maximize the resources at your disposal, because you have people who’ve never thought about how they’d respond to those circumstances.”

Both Schultz and Knebel make vital points. What will save the most lives in an overwhelming emergency probably won’t be refining how a set number of patients is triaged, essentially shuffling the same deck of cards so that different numbers and suits come up on top. What will save more lives will be doing everything possible to avoid having to deal the hand, by taking steps to minimize the need to compromise standards, and promote the ability to rebound as quickly as possible to normalcy. One of the greatest tragedies of what happened at Memorial may well be that the plan to inject patients went ahead at precisely the time when the helicopters at last arrived in force, expanding the available resources.

The failure to emphasize situational awareness in disaster response—maintaining the ability to “see” in the midst of a crisis—concerns some experts, including Dr. Frederick “Skip” Burkle Jr. After the attacks of September 11, 2001, he laid out ideas for how to handle the victims of a large-scale bioterrorist event. Those protocols,
described in an academic paper, became key aspects of the Canadian pandemic triage guidelines and ultimately made their way into most of the other disaster standards of care plans. “I have said to my wife, ‘I think I developed a monster here,’ ” Burkle told me. What worried him was that the guidelines were often rigid, with a single set of criteria designated to be applied throughout the severe phase of an emergency. Rationing when rationing is not
needed could harm the population. Burkle, by contrast, had stressed the importance of reassessing the level of supplies “sometimes on a daily or hourly basis” in a fluid effort to provide the best possible care and minimize the need to make such wrenching decisions.